Recommended Posts

Help! My 12 year old has been gluten free for 5 years. However, she gets a really bad stomach ache, "sloshing" (her description), and reflux a couple of times a month. Our blood tests keep coming back "clean", no contamination. However, I suspect she is getting glutened. It seems a lot of "gluten-free" foods (cheerios!, sunmaid raisins, certain brands of almond milk). I keep a food and symptom diary but it is really hard to pinpoint what it may be sometimes. For the past week she has had terrible stomach aches and reflux. I try to keep our kitchen clean. The only "gluten" in the house is bread for my non celiac husband. We've gone through EVERY test-- negative! Questions: who else has gone through this and what did you do to get better? Do you eliminate dairy for a while after getting glutened? Is it gluten at all? She has tested negative for other food allergies and is not lactose intolerant. Anyone try "holistic" doctors? Live in US and getting NO WHERE with our conventional docs. Help!

Maybe it has nothing to do with Celiac and gluten? People do get reflux and "sloshing" and not have Celiac. Maybe go to a pediatric GI and see if she has something else going on? Maybe see if she will do a more restricted diet for a few weeks so you can add things in and see what bothers her?

Share this post

Link to post

Share on other sites

Yes I've been thinking that could be the case. I've already brought her to the pediatric GI. She just "doesn't know". We have been making sure she's not constipated (she's not). Very frustrating. I see one of your interests is making teens eat vegetables! Me too! Good luck with that...Thank you

This sounds like me as a kid! I was diagnosed with celiac when I was 15 (after being sick since I was about 10).

I had to cut out dairy, ALL processed gluten free foods, most grains & legumes and other gluten-cross reactors before getting better. I was also treated for SIBO and leaky gut. Might want to look into that.

Share this post

Link to post

Share on other sites

Ditch the Cherrios! Their testing and process is sketchy at best. Also like others have said many celiacs can't tolerate even purity protocol oats. My GI and nutritionist both warned me to try to stay away from oat but maybe a few times per year because of cross reaction issues. If that doesn't help then I would try elimination diet of the big hitters I.e. Soy , dairy, eggs, beans. She may not be allergic but she may be sensitive.

Share on other sites

I could have sworn that my 19 year old niece had celiac disease, but she tested negative. Doctors didn't know what she had (two different GI's). Her symptoms were sporadic. Finally, her new GI ordered a pill cam. She was diagnosed with Crohn's Disease. Not saying that your daughter has Crohn's but we were all sure she had celiac disease. Just couldn't see the Forest through the Trees!

Trying thinking outside the box. SIBO is another thing to rule out (Anna's suggestion and PinkyGurl's leaky gut/intolerances.) Stick to whole foods and avoid even certified gluten free foods for a while. Finally, when I've been glutened, I do become lactose intolerant again. I have to eat soft, well-cooked foods (even fruit) that are easy to digest for a while.

Oh, here's food for thought. I was reading Dr. Fasano's Gluten Freedom. One teenager started to get sick again. His parents couldn't figure it out. In a private conversation, Dr. Fasano learned that the kid was dating a girl and he didn't want her to know he had celiac disease. So, he ate pizza. Nothing happened. He did it again. Nothing. A few weeks later, his celiac disease symptoms resurfaced. Not saying your daughter has cheated, but she's in middle school and that's a tough age. Kids are desperate to fit in (I have a 15 year old).

Share this post

Link to post

Share on other sites

Since I went gluten free, my acid reflux (and it was severe!) went away. I do still get some heartburn, though not nearly as bad as it was. I've realized certain foods will trigger the heartburn for me: peanut butter, vegetable juice, spaghetti sauce, peppers, salsa. I find that sleeping on my left side at night helps. If I take those chewable antacid tablets, I wait until I've burped before I lay down.

Top Posters +

Upcoming Events

NEW ORLEANS GOURMET
GLUTEN-FREE mini GETAWAY
March 24 ~ 27, 2019
We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun. We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.
Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.
Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.
This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before. Check out our website for the complete itinerary and cost.
Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.
If you have any questions just give us a call at 410-939-3218.
Bob & Ruth
info@bobandruths.com
(410) 939-3218

Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.

The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.

The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.

The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com

Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts.
Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
ABOUT THE NOURISHED FESTIVALS
Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com

Forum Statistics

Forum Discussions

TDZ, that is interesting that you mention weed-eating as coinciding with the start of your husband's rash, as about 12 years ago I had a possibly similar experience. It was in the spring (meaning late May here in SC Alaska), and I was cutting the lawn. Rather than bagging up all the lawn clippings, I would just take the filled bag off the mower, walk into the woods behind the house, and pull out the clippings with my hand and then scatter them around (so that they didn't just all rot and feste

Not a clue, other than normal eating. He ate a fair amount of bread, and pasta and pizza and such. Right before the massive outbreak in November, there was a peppermint/chocolate-drizzled popcorn that I got at Walmart, and it gave both of us horrible diarrhea, and within a few days he was covered with more rash than ever before. Might have been unrelated, but it's the only unusual thing that times out right for any causality. Otherwise, he wasn't eating anything different.
The first thing t

Well, TDZ, I certainly hope that your husband is able to get some Dapsone to quickly ameliorate his DH (and that it does not have too many adverse effects on him, either).
It sounds like your husband's DH is worse than mine ever was, so I can only imagine the ongoing agony that he's been dealing with. To call DH "just an itch" would be like calling am amputation "just a scratch", i.e., probably nobody who has not experienced it can imagine how frustrating, distracting, maddening and depre